1) Do we need a global database of patients? Yes

2) What is the database for nd what information do we need from those registering? agree with Tom, assuming we are going to use it as an ongoing source of gathering more information as needed.

3) Who runs it?Regions are good; I think neurotalk should be one of the locations - it's neutral, professional, and will likely be around a long time. Adding that it also constantly draws more patients in.

4) How do we promote it? the video- in addition to other suggestions

5) Should there be a video? yes

6) What should the video be about and who should organise it? volunteers who are intersted -with you tube - you can easily make it global. The video can be embedded in any site. Worth the effort any money spent, but I think we will get volunteers. Adding answer to first question - the video should be about our needs - and show how this database might help those needs to be met.

7) What rules should be applied to the use of the database? i think it should be considered that some data be shared if it's for a good, pre-screened cause, but not sold.

8) Do we use the database for commercial purposes? no

9) How are future decisions about the database made?To be determined

10) What do we call the database?
Electronic email registry

paula